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Saturday, 19 November 2016

Chronically Invisible: Dear Society!

Dear Chronically Invisible Patients,

"You are all Superheroes fighting big battles! With courage beyond your years! And show others the meaning of unconditional love! Your stories teach others to endure, to face challenges, to love selflessly and find the strength we all have within. Your love extends sunshine warming all those around you!"

Dear Society,

Shockingly, about 15 million people in England have a long-term condition (Department Of Health (2012). Long-term conditions or chronic diseases are conditions for which there is currently no cure, and which are managed with drugs and other treatments. Sadly, according to WHO Chronic diseases are the major causes of death and disability worldwide.

"How are you?"

"I'm okay, thanks." This reply is so much easier to say than to explain why we are not okay. Which is everyday. We have trained our tongue so well that without even thinking, the words automatically come out before we even have processed what they have asked us. A reason for this being is that many times when we have told people how we actually feel they pity you for the rest of your life. You become the illness. Not a person. Some people regret even asking you in the first place. So to keep everyone happy the automatic response seems reasonable.

"But you don't look sick!"

A remark thousands of people with invisible illnesses are subject to. Most of us in this community are too nice, we just smile and nod, some may even say its just comes automatically to us or that we have heard it a million times. Perhaps a response that is in some of our heads that would make people think would be: " Please do tell me, what does sick look like?" "I will make sure to satisfy you and try to get it right next time!"

This remark doesn't just come from our family, friends, and strangers but also our trusted doctors. A simple reply of theirs would be "It's all in your head!" and send you away home without a second look. I ran a Facebook page and Facebook groups, which has hundreds of members most of whom have been told this by professionals. This leaves us in more distress and some even start to believe that it may be in their heads after all. Many of us continue this fight even after we have been diagnosed with a chronic illness especially in A&E/ ER when all you're information should be on the system but they still doubt you. That is one of the hardest parts of being chronically ill.

The worst thing you can do to someone with an invisible illness is to make him or her feel like they need to prove how sick they are.

"My cousin's friend's, sister's uncle's, wife use to have that. She did this and that and that and now she is perfectly fine. You should ask your doctor that too." The number of times we hear this is unfathomable. Yes, we know you mean good but please stop comparing us to others. For most of us, it is a life long illness that does not have a magic cure. Yes, it is great to stay hopeful and faithful for future advancements in medicine but it is kind of hard when you are told there is no cure.

Have we come to a point to where we need to put a label on our foreheads to say we are unwell? A
common everyday problem is parking in the disabled bay. We may not have wheelchairs but does that make us less disabled? The cynical looks you get. The whispers you get. The disgusted looks you get. All this really makes you wish you had a label permanently marked on your forehead. I know people in our community who suffer from falls just by standing up. As they stand up their blood pressure drops and their heart rate increases, so the body's response is to fall flat so it can accumulate for this. Others suffer from dislocations and subluxations by simple movements. Some may even have a small bag with them (you may think what does a small bag have to do with being disabled?) don't be too quick to judge! That small bag they have with them is their lifeline! It can be either a machine to feed them through a feeding tube or an oxygen machine to help them breathe. So do we really have a right to say to tell someone that they are not ill? This is in no way to say that those in wheelchairs are less important but only that we should not judge a book by its cover.

Funnily a friend of mine had a deliveryman deliver her TPN (Total Parenteral Nutrition) and his first words were:
"Is this for you?"
She replied "yes." You can guess what he said afterwards...
"You don't look like a person who will need this." Now, we don't blame him for saying that, but it does get tiring constantly being told this. There is a lack of education about chronically invisible illnesses and lack of awareness of it. You can now see why they are called invisible illnesses.

We are not being rude or shady, we are just so awesome that even our own immune system can't get enough of us. It simply does not want us to be shared with others. It just wants us for its self. Who doesn't want to go out with their friends and have fun? It is human nature to be around those you love and wanting to spend time with them. But being chronically ill these little joys in life are not so easy. I may be okay now when I have told you I can meet you but 2 minutes later things are not so certain. I guess what I'm trying to say is that we can't make plans not because we don't want to but because it is out of our hands. So please be patient with us. The worst feeling is not being able to keep a promise to your friends and backing out in the last minute or not even being able to plan in the first place. This sort of guilt eats us away.

Just because you can't see the symptoms doesn't mean they are not there. Most of us want to be constructive members of society but society seems to be irritated with us because we look 'normal'. But we ask you this: what is normal? I will leave you with this message. Illness knows no limits. It does not respect one's age or attitude. It simply says I will change your life but no one will ever know. We may not look sick, but turn our bodies inside out and they would tell a different story.

3 comments:

Thank you Hafsa! I have a disabled parking permit (that I only use when I need it, and as you well know some days are worse than others) but HOW that may manifest that day can be different every time: I might have a broken bone at the time (visible); a dislocation (not visible); crippling gastric issues (not visible); or just be in extreme pain (again, not visible). I get some looks and glares from people for parking in a disabled spot when I "obviously" don't need it. I admit there have been times when I have actually exaggerated the slight limp that I have, just so people don't think I am a faker! How ridiculous that I feel the need to do that! I will never do it again! I shouldn't have to.......

I too have invisible illnesses. I have Ehlers Danlos Syndrome and Gastroparesis... I've exaggerated my limp as well. I shouldn't have to feel guilty for parking in a space when I truly need it. I've been given dirty looks and called names by people in parking lots because of me using a disabled space, even though I have a disabled tag and truly AM disabled.